ONCE UPON A GENE - EPISODE 123

Figuring Out How to Infuse Meaning in the Days After the Loss of a Child and the Daunting Task of What the Hell to do Now with Liz Morris

Liz Morris is a guest blogger on the Courageous Parents Network and a fellow Seattle rare mom who lost her son Colson to mitochondrial disease in 2020. 

EPISODE HIGHLIGHTS

In your most recent blog, you spoke about obligation and purpose. How has your obligation as Colson's mom and as his full time caregiver changed as a mom now who has a lot of time.

I loved being Colson's mom and thrived in the intense clarity of knowing how to care for him, keep him safe and advocate for him. I had other things to do, but it was all secondary to caring for Colson. Now that he's gone, I know how intensely and passionately I can focus on things and how meaningful that can be. Now that Colson is gone, my day can be dull and I'm trying to figure out how to direct the same level of energy and purpose into something useful, particularly for parents in the thick of caregiving. 

Have you experienced a fundamental transformation as a rare disease mom and then after losing Colson?

When Colson was alive, my world expanded and I learned a lot about non-normative ways of living and I learned of others living in those spaces. I've been trying to hold onto that expansive mindset. Grief will either crumble me, or this part of our story can expand my empathy, resilience and relationships. 

Do you still want to associate with other rare parents?

I want to stay connected to families in the rare disease community. When I spend time with friends with children like Colson, I feel close to him. I enjoy watching the community blossom and grow and seeing the level of support and care people have for each other. We started palliative care when Colson was 7 months old and I like to stay engaged and continue advocating for palliative care because it's a powerful and transformative resource. 

What's the difference between your grief when Colson was alive and your grief after he passed?

I had a lot of ambiguous grief when Colson was alive. I did a lot of active anticipatory grieving while he was alive, which helped me in the immediate aftermath of his death. I carried the grief I had before his death into the next phase of living without him. Palliative care really helped me through the decisions we made before he died. We feel that in the final moments when we had to make hard decisions, we were able to do so through an act of love, and our grief is mitigated in that we're not agonizing over our decisions. 

LINKS & RESOURCES MENTIONED

Rare and Relatable on Discord

https://discord.com/invite/7UFUPAFs8K

Liz Morris - Courageous Parents Network

https://courageousparentsnetwork.org/blog/author/liz-morris

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